B96 Trial and will I get there?

[Narna1]

hello everyone

I was diagnosed 3C HGSOC in Nov 2021. After 6 rounds Carbo:taxol and debulking surgery I was NED in June 2022. By end Oct I had recurred only 4 months later, Niraparib not doing its job. I’m platinum resistant, BRCA neg. HRD =30

I was advised to wait to get onto a treatment plan and hope to start the B96 Phase 3 trial SOON Paclitaxol:Bevecizumab:pembrolizumab(double blind placebo)

My main concern is that I have become quite unwell as the cancer has spread higher up in my abdomen and is causing a lot of pain and I’m unable to eat much. Other problems are constipation and back pain.

I’m taking pain medication alongside a ton of other medication to keep me going.

Has anyone any advice about how to keep relatively ‘healthy’ in the run up to starting treatment? I’ve been advised that I might not be able to take part in the trial if I’m not well enough.

I’m really struggling now, I was relatively okay at Christmas, it’s really come up and bit me in the bum

Any advice would be welcomed xx

[delia2]

Hi. I’m wondering if the pain meds are causing the constipation? In my he US we have milk shakes called Ensure for people who can’t eat much. I’m sure you have the equivalent. I know you feel ill but getting out and take ng short walks would probably help with your overall health. You don’t mention palliative care but they might be able to advise you. Xx

[Narna1 in reply to delia2]

Thanks, you’re right, the pain meds have made the constipation worse but doc has said I’ve got to get pain under control as a priority. The hospital has referred me to palliative care so I’m expecting to hear from them soon. I’m sure you’re right about going out. I do try as often as I can. Fortisips is our equivalent of Ensure, it’s pretty yuk but does the job. Many thanks

[Leniko in reply to Narna1]

if you use ice and a straw and try not to breathe through your nose, it’s more pallitable. The smell is what adds to the yuk. Try to target foods that do appeal. Peanut butter, banana, fruit and cottage cheese, and sour food did it for me. 🙏

[Reksio77]

Hi. I'm in Switzerland with HGSOV 3c diagnosed in October 2019. I've read about the clinical trial you/ve been proposed. I wonder if you had done anoher genetic tests than BRCA (which is a routine nowdays). Pembrolizumab (Keytruda) is a immunotherapy which targets mutated genes - MSI and MMR. In other cases it doesn't seem to work. I've had Bevacizumab = Avastin as a maintenance monotherapy, but after only 5 months I had recurrence. So, maybe you should ask your oncologist for details and safety, especially if your general health is not good. For constipation - Lactuloze or fibres. Nutridrinks for improvement of your general shape.

[Narna1 in reply to Reksio77]

thanks, very helpful. I’m going to ask about the other gene mutations

[Cardiff05]

Hi I'm sorry you're having such a tough time.Short walks and gentle stretching even some gentle resistance training using bands (Decathlon sell them online) can all help.

It's really important you stay hydrated plenty of water and small frequent meals through the day.

[Narna1 in reply to Cardiff05]

Good advice, thank you very much. I’m going to try x

[Pooshon]

sorry to hear you’re not well I do hope you feel better. Where is the B96 trial taking place?

[Narna1 in reply to Pooshon]

Addenbrookes Cambridge

[Irisisme]

Hi Narna,

I won’t outline my history, there is too much of it! I’m currently having Cisplatin and Caelyx as 4th line due to metastasis in my liver.

My advice is first to do everything you can to get the pain management you clearly need. I’ve recently tweaked mine and it’s made so much difference.

Yes, you will also have to take more laxatives (I have docusate sodium and Laxido powders). Also, try to see a nutritionist because sometimes you need more fibre but at other times a fibre-free diet is best. Certainly the advice to find special shakes is good if you can’t eat much.

Once you’ve got better pain and nutritional management you can do more exercise. Start with gentle walks (around the garden if you have one, and it’s not icy) and stretches. I had a physiotherapist/rehabilitation nurse from my local Hospice come to me to check what level of exercise I can cope with. Maybe you can contact your local Hospice if you are in the ‘palliative only’ category (where I’ve been since 2017, and still here!).

Hopefully, you will be fit enough for the trial by the time the decision is made. Maybe there will be an alternative treatment that becomes available to you soon. If you are told that there is nothing else, do consider seeking a second opinion.

I wish you lots of luck,

Iris🤗🍀

[Narna1 in reply to Irisisme]

that is all so helpful, thank you, inspiring too

[Iside]

We have health drinks from pharmacy on NHS for patients to boost their intake if not tolerating regular food. They’re quite sweet but effective . Cheers Iside

[Leniko]

daily Colace can make a difference